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What do you get when you combine two brothers, one bike and endless determination? Hopefully, you'll get a cure for Crohn's disease.

Join us as we talk with Troy and Todd McManus, brothers from North Carolina who created the fundraising group Crankin' for Crohn's. Listen in as they share what inspired them to start their organization that encourages fitness, raises public awareness about Crohn's disease and helps fund research for a cure. And hear first-hand about their 400-mile journey across North Carolina and their goals for the future.

As always, our guests answer questions from the audience.

Announcer: Welcome to this HealthTalk webcast. Before we begin, we remind you that opinions expressed on this webcast are solely the views of our guests. They are not necessarily the views of HealthTalk, our sponsors or any outside organization. And, as always, please consult your own physician for the medical advice most appropriate for you.

Now here’s your host, Rick Turner.

Rick Turner: Hello and thank you for joining us for Two Brothers’ Quest to Cure Crohn’s. I am Rick Turner.

Have you ever been touched so deeply by a cause that you just had to do something about it? Well, meet Troy McManus, cycling enthusiast and founder of the Crankin’ for Crohn’s Foundation. Since the age of six, Troy has watched his older brother, Todd, struggle with Crohn’s disease. Then during his second tour of duty in Iraq, he got an idea. He would use his passion for cycling to help his brother and others with Crohn’s. In this webcast, Troy and Todd McManus join us to tell their story.

Gentlemen, welcome to the webcast.

Todd McManus: Thank you.

Troy McManus: Thank you, Rick.

Rick: Great to have you joining us today. Troy, I want to start with you and talk specifically about your foundation, Crankin’ for Crohn’s. What is it, and what do you hope to achieve with it?

Troy: Well, it is a nonprofit organization that I came up with using cycling as a tool. There are more people that ride bicycles in the United States than play golf, ski, and play tennis combined. So I took my love of cycling, and I decided that, like Lance Armstrong, I wanted to use cycling as a means of doing good for somebody. Well, because of my extreme passion and hate of Crohn’s and colitis after watching my brother suffer through it for all these years, I said, “Well, you know what? I am going to use cycling as a tool to help fight Crohn’s and colitis. After many hours of thought and discussions with people, I came up with the idea that I would kick it off by doing a solo bicycle ride across the state of North Carolina.

Rick: And when was that?

Troy: The plan was to do it in September – it wouldn’t be too hot, wouldn’t be too cold. And what I basically did is, from the time I got home from Iraq in April of this year (2007) until September, I trained for the 357-mile ride across the state. I also used that time to get some help with hotels and sponsorship and whatnot. And on September 9, we left from Banner Elk. It was myself, my brother Todd was with me, and my brother-in-law Bobby Moshette was with us, and we set out across the state of North Carolina. And in seven days we rode from Banner Elk, North Carolina to Surf City, which is right at the coast. So basically I rode all the way from west to east across the state of North Carolina.

Rick: And the goal was to raise money?

Troy: The goal was to raise money and educate people about Crohn’s and colitis.

Rick: And where does that money go? Do you have specific ideas of where it’s going to go?

Troy: Yeah. We have a charter for our organization that says our money is earmarked to go directly to the Crohn’s and Colitis Foundation as a way to help them fund research. The key thing here is that the money that we raise as an organization is specifically marked for research.

The Crohn’s and Colitis Foundation does a lot of great things. They have educational programs. They have patient advocacy programs. They have research programs. They have things that educate people. And I want the money that we raise to go to find a cure. I want it to go to fund some research projects that would hopefully bring an end to the suffering for over a million people in the United States.

Rick: Very good. I want to bring in Todd for just a second here and get his reaction to this.

Now, Todd, what did you think when you heard about this project?

Todd: I thought it was a pretty big project, but once we got it started, everything kind of rolled into place. We are getting help from everybody – you guys are a great help, and local companies and pharmaceutical companies are kicking in. So it seems to be coming along well.

Rick: Gaining some momentum, as it were? That’s great.

Todd: Yeah. The whole family has kicked in. Everybody is helping out. I mean, even the kids have helped out.

Rick: That’s good. I’m curious, Troy. You got this idea, I understand, while you were serving in Iraq. How did that come about? Was there anything specific about your experience over there, do you think, that triggered this idea?

Troy: Well, I’m not going to say there was or there wasn’t. I will tell you that an active duty tour in Iraq is a life-altering experience regardless of where you are at. This was my second time over in Iraq. This tour was a lot easier on me mentally and physically than my first tour, which was obviously at the start the war. However, what really got me thinking about this was I’m sitting over there, defending the country, and there’s people back home that are not really supporting us. But that doesn’t matter because we do our jobs proudly, and we do it the best of our ability. It doesn’t matter what we are asked to do – as military we do it without question. And that’s the way it has always been and hopefully that it will always be.

But the bottom line is I was sitting there one day, and I was watching the Tour de France, and I said, “You know what? I’m going to make this road cycling thing more than just a recreation for me. I want to do something that’s going to benefit somebody else.”

And I started looking around the Internet, and I saw a couple of things that really caught my attention. And the bottom line for me was here I am, a 36 year-old man riding a bicycle. I looked at the information about Crohn’s and colitis and discovered that most people don’t get diagnosed until their 20s or early 30s. And I said, you know, these kids that are out there on the street right now in the United States that are eight, nine, ten years old, they are out riding the scooter, riding their bicycles, playing soccer. They have no clue that they are going to be diagnosed with Crohn’s disease or colitis when they are 20, 25 years old. And somebody has to do something to help fight this stuff.

Rick: And that’s what you are doing. Todd, were you 13 when you were diagnosed?

Todd: Yeah.

Rick: So you are one of those kids that Troy was talking about?

Todd: Right. And I had had problems since I was seven or eight. And it was always blamed on worry or stress or whatever, and it never really went full blown until, like age 12. I think my appendix burst, and I had that taken out, and it just went and skyrocketed from there.

Rick: So you were in the hospital at the age of 13?

Todd: Yeah. I went in two days before Christmas, and I got out on the 20th of February, the day before my birthday.

Rick: Now, this was back in 1977.

Todd: ‘77, yeah. Big blizzard in Buffalo, and it was a mess.

Rick: And they didn’t have the options of treatments that are available today, right? What were you given?

Todd: They had me on massive doses of prednisone, Azulfidine (sulfasalazine), and a total cut-off of any food whatsoever and hyperalimentation, being fed through a tube, that and the intralipids. And it pretty much blew up every vein in my body, and they had to keep sticking me every couple of days because it was such a strong medicine, I guess. It just burns your veins out real quick.

Rick: I know you have been through many surgeries, right?

Todd: Yeah. I think about eight of them now.

Rick: And when did they start? At that first episode?

Todd: Yeah. That was the first. They kind of held off until mid-January or so, and it was not doing what they wanted it to do, and that was the last resort. It still is a last resort effort as far as Crohn’s.

Rick: Right. So Troy wants to do this to hopefully prevent other kids having to go through what you went through. How do you think that experience changed you, Todd, as a child?

Todd: As a child, I felt left out a lot, ripped off. I guess I tend to overindulge in things now. If I go out, if it’s not fun, I don’t want to be doing it. I just want to live every single day and have the most fun I can, because there were a lot of days I couldn’t or didn’t want to. And I think it’s changed me a lot. I take life seriously, but not as seriously as some people. I try to enjoy it more.

Rick: Now, there is an eight-year age difference between two. Is that right?

Troy: Yeah.

Rick: Now, Troy, you were pretty young when this started, right? About six-years-old or so?

Troy: Yeah, I was about six or so.

Rick: Looking back, how do you think that impacted your relationship with your older brother?

Troy: Obviously there was an age difference, so the people that Todd hung out with when he was a kid weren’t even remotely interested in me being around.

Rick: Right. You were an annoyance, right?

Troy: More so than not, right. And I don’t know if it really affected our relationship as a brother-brother type of thing, but what it did for me was it got me to realize that no matter how bad life gets for me, there’s people out there that are going through things that are a lot worse than what I am dealing with, regardless of the situation. And I really, really have sympathy or empathy, whatever you want to call it, for people that are dealing with this.

Rick: I’m sure.

Troy: I’m a healthy 36-year-old for the most part. And I sit and I read a lot about Crohn’s and colitis obviously because of my passion to fight it, but more so to realize that people are going through this.

Rick: Yeah. And you realize how lucky you are by comparison.

Troy: Exactly.

Rick: Todd, I’m curious – I’d like to get your sense of how that disease progressed from that first experience at the age of 13. Did things get better over time, get worse, what happened?

Todd: Well, yeah. I mean, I was real good after the surgery and stayed on the prednisone. Everything was in check for about ten years, and I think I was maybe 24 or 25, and I started having problems again and started getting treatments. I took pretty much the same things really, Azulfidine, prednisone, was hospitalized once or twice, and they put me on IV’s and shut the system down for a week or two.

And then I had perforations, and I was ready for the end. You know, I wanted it to be over, and that’s when my grandfather took me out to Claiborne Clinic, and I had about five surgeries, one right after another.

Rick: As a result you don’t have much intestine left, right?

Todd: No. I would say I’m getting down there. I have maybe 18 inches at the most.

Rick: And an ostomy.

Todd: Yeah, ileostomy. They took all my colon and all but about 18 inches of small intestines left. So food goes through pretty fast. Nutrition is real hard to come by.

Rick: Right. I understand you have to eat like 5,000 calories a day.

Todd: Oh, yes. Five, six, seven thousand – I could eat ten [thousand] a day and still not gain a pound. You know what I mean? It’s tough.

Rick: Now, you also have a family, right? You have a wife and kids?

Todd: Yeah, an estranged wife. We’ve been separated since a few years after my last surgery, I guess. It’s pretty stressful for that too.

Rick: I would think. I mean, it’s stressful for everybody living through that.

Todd: Yeah, it is, and it really took a toll. But she lives in New York State, and my two kids, my daughter is 20, my son just turned 19. He’s in the Air Force. So, Kevin, if you are listening, how are you doing, buddy? He’s down in Texas right now.

Rick: And, Todd, what about your work experience? Have you been able to hold a steady job?

Todd: No, I haven’t. And I’ll tell you the truth, I haven’t worked in about two and a half years. I am really fighting for my disability.

Rick: I was shocked to read that it was not recognized by the government as such.

Todd: They just don’t realize how debilitating it is.

Rick: They must not.

Todd: And especially my condition. I mean, it’s a debilitating disease anyways when it’s active, but when you get darn near everything taken out of your system, and not left with a whole bunch to work with, and all my day is spent eating and going to the bathroom, getting rid of stuff, and it’s pretty brutal.

Rick: Right. So today, Todd, how are you doing?

Todd: Today is a good day. I’ve been having a good day. I mean, I’m tired a lot. I sleep quite a bit. I don’t have a lot of energy, but I do what I can do and try to have fun doing it and eat, eat, eat, man.

Rick: And, Troy, how much do you guys see of each other? Do you live close to each other?

Troy: Yeah. We actually live about four miles apart right now. When we started the organization, the situation in the family’s life enabled my mom and my brother and stepfather to move from out by the Charlotte-King’s Mountain area back to Fayetteville. They have been here before. It has made it pretty nice, having the family right close and being able to talk to them on a daily basis without having to call long distance or worry about things. We see each other quite frequently.

Rick: That’s good.

Troy, let’s talk some more about your getting this foundation, Crankin’ for Crohn’s, underway. It started in April of last year, I understand. You had mentioned that Lance Armstrong was kind of your template, your model, that you were looking at initially. Also something called Get Your Guts in Gear. What was that?

Troy: Well, Get Your Guts in Gear is an organization that is also supported by the Crohn’s and Colitis Foundation of America, and basically what they do is they put on three-day, 210-mile-long bike rides. You are riding 70 miles a day. And the people that participate, they pay a registration fee to do the ride, and then they are also asked to raise additional funds as part of the event to help raise money for Crohn’s and colitis. And from what I understand, their program is working pretty good. I have not been able to participate in one of them yet, but I do plan to before too long. They have them in, I think, four or five different locations around the country right now.

Rick: And you mentioned Crankin’ for Crohn’s was a slightly different model than this. You talked about that initial ride you made across the state of North Carolina.

Troy: Right. There is a program called Cycle Carolina, and they put on a ride that’s called the Mountains to Coast ride, and it’s a week-long event where people ride across the state of North Carolina as a group. It’s a touring ride, and it’s not designed to be any type of a race or competition. It’s just strictly for the fun and beauty of riding and being able to stop where you want and ride where you want, and they have designated stopping points for each day. And it’s fully supported. They provide camping services if you need them, and they have all kinds of things that they provide for the riders.

But after I did the first bike ride across the state, I realized very quickly that for an organization just starting out, it would be a logistical nightmare for a small group of 20-25 people, which is what we are currently, to put on an event that would take 500 to 1,000 riders from one part of the state to another.

Rick: So how has your model shifted or changed?

Troy: Well, our model has shifted in that we have opted to go to a smaller, one-day bike ride. We are going to try to keep it what’s called a metric century which is a 60- to 64-mile roughly, hundred kilometer bike ride. And I think that those will work out real well.

Rick: How many have you had so far?

Troy: We have had one so far, and we did it in November. Unfortunately, the weather didn’t cooperate with us as well as we would like. It was real, real cold out the morning of our ride, and we had a pretty small turnout because of it. However, the people that did come and ride their bikes said it was the best ride they had ever been on. It was well supported, you know. I am also a member of a cycling club here in Fayetteville, North Carolina, so I have the help of a lot of people who know about cycling. And I asked the questions: What do you want in a cycling event, and what kinds of things do you expect to see, and what kinds of things are nice-to-have items?

And so I put the model together for the cycling event, and I said some things that are going to have to be in play if we are doing this for Crohn’s disease, one is there are going to have to be restrooms at the break areas. If somebody with Crohn’s or colitis comes out and wants to ride their bikes, we have to be able to provide them with a restroom facility in case they need to stop.

Rick: I would think you had to do a lot of education just about that factor, right?

Troy: Oh, yes.

Todd: Yeah, I got a lot of phone calls, Rick.

Rick: I bet you did.

Troy: And I looked at diet. I looked at things that bike riders were expecting to see at a rest stop. I looked at the kinds of foods that are not only nutritious for anybody, but the kinds of things that wouldn’t bother a patient – fresh fruit, grain-type products,granola bars, stuff like that.

And I had all that stuff available for the riders. And that’s going to continue to be our model. Our plan is to put on the best bike events in the state from the registration process all the way through to the finish line. We want them to be completely comfortable, completely catered to, and we want them to come back, obviously.

Rick: Sure. Is there much expense involved in putting these together?

Troy: To be quite honest, it’s not as costly as some of them depending on your sponsorship participation. To have everything you need, you are looking at between two to five thousand dollars. And the potential for your return is as many people as you can get to come ride their bikes at 25 bucks a pop, you know.

Our organization doesn’t ask anybody to raise any additional funds. That’s one thing that I didn’t really like about the Get Your Guts in Gear model. I just think you are going to get more people to come if they are required to do less. And if they want to do more, by all means, we’ll take their money. It will go for a good thing. But I don’t want to put the burden of making people raise additional money on top of the money that they are giving for the registration of the event.

Rick: Got it. Okay.

Todd, you took part in the cross-state ride, is that right? How did that go?

Todd: I was the official photographer, and I just rode along. We followed Troy in a pickup truck and had all his gear and extra bikes and our clothes and everything else. And pretty much I just talked to people along the way. I took all the pictures.

Rick: How was your stamina?

Todd: Oh, not too bad. It was nice just riding in a car all day. I didn’t have to drive. I just rode along, and we slept well. All the hotels across the state donated rooms for us. And it was a good event. It was nice seeing the state at that slow speed, you know.

Rick: Yeah. And I bet you did a lot of educating on Crohn’s disease, did you not?

Todd: Well, yes. We ran into a lot of people who just had no clue what it was. And, you know, you see this pickup truck with a trailer and a couple of bikes on the back pulling into the hotel, and people get curious. You just start talking to them, and we even managed to get a few donations along the way. So it was kind of nice.

Rick: Good. Troy, you are working in partnership with the Crohn’s and Colitis Foundation of America. Why did you choose to partner with them?

Troy: Quite honestly, the CCFA is really the biggest and most publicized Crohn’s and colitis organization in the country. I checked out their background. I know that they already have research projects that they are funding. They give several million dollars a year to research projects to try to find a cure, along with other things that they have going on. But the reason that I chose them specifically for this project is I read a little piece, a blurb actually on their Web page that said that they are looking for $50,000 to fund research projects. So that’s what I set our target goal at. If we could raise that $50,000 as an organization every year, then we can help the Crohn’s and Colitis Foundation meet their goals and hopefully find a cure before long.

Rick: And in terms of partnering with the CCFA, what do they bring to the table here? You are raising some money for their research, right? How do they help you?

Troy: We are still in negotiations about that, if you will. The North Carolina chapter has been very supportive. Angela Parks out there in Charlotte has given me all the help in the world, with coming to my event. She was at the finish line when I finished my state-long ride. Bless her heart, she drove down from Charlotte that morning and was there at the finish line when I crossed, and she is there to answer any question I have.

And right now we are working on trying to get the support from the national headquarters so that we can be fully affiliated, basically all the nuances that go along with this type of an organization – i.e., event insurance, 501C help as far as the nonprofit donation stuff, educational material obviously is first and foremost. They provide us with all of our information and resources to give out to people about Crohn’s and colitis. It’s really a give-take relationship. So they are helping us as best they can so that we succeed, because the end state is the CCFA is the one that is going to benefit most by being a part of this organization as well.

Rick: But you are doing your part. Now, in terms of your fundraising events, Troy, are they just the cycling, or do you do other things as well?

Troy: Oh, no. They’re not just cycling. We have done a couple of huge garage sales or yard sales, if you will.

Rick: Really?

Troy: Oh, yeah. We raised over $1,500 just doing yard sales.

Rick: That’s great.

Troy: And, you know, that was all stuff that was donated to the organization by either the members themselves or friends of members that knew we were doing this big yard sale for charity. And they just gave up their stuff that they didn’t want or didn’t need anymore, and they just said take it. If you can make a couple of bucks on it, great. If not, throw it away, whatever.

Rick: And you also have some items from celebrities? Oh, yeah. We have a project that we’re working on trying to get together. We have sent out letters to several hundred celebrities, and we have a pretty good sized collection of autographed pictures.

Rick: From whom?

Troy: Different people. We have Dom DeLuise who was very gracious, sent us an autographed picture, actually drew us a cartoon.

Rick: Really?

Troy: You know, and gave us the best George Carlin sent us an autographed picture, Brooks & Dunne, a whole slew of people, and that project is still ongoing. So by the time we get ready to have this auction, there will be things that people might want to grab onto. Amy Grant is another one. She gave up a copy of one of her CD’s and a T-shirt that’s autographed, a hat. And I can’t remember the gentleman’s name. He was the last member of the brat pack.

Todd: Oh, Joey Bishop.

Troy: Yeah. Joey Bishop, we got one of his last autographs right before he passed away not too long ago.

Rick: Wow. So you’ve got quite a bit going on.

Troy: Yeah. And we have a lot of other stuff planned. We are putting together a cookbook right now that we are going to be selling.

Rick: A cookbook with recipes for people with Crohn’s disease?

Todd: Not really. It’s more from all our members and people that we have run into. Everybody has donated one of their favorite recipes, and we are putting together a cookbook.

Rick: I also want to touch on something. Troy, you said that you are committed to helping kids with Crohn’s get to something called the Victory Junction Game Camp. Can you tell us more about that?

Troy: The Victory Junction Game Camp was a project that was started by the Petty Family of NASCAR. Kyle, one of the drivers, Richard Petty’s son, started this camp after they lost his son to an illness. And what they do is bring kids that wouldn’t normally be able to go to the summer camp experience. They bring them to summer camp for a week. They do all kinds of activities, but the ingenious part about it is it’s all medically resourced. They have kids coming in that have cancer. They have the stuff there at the camp that the kids need so they can go to camp and also receive chemotherapy if that’s what they need.

Rick: Wow. And where is the camp?

Todd: It’s right here in North Carolina. The downside is it costs about $500 to bring a kid to camp for a week. That is all-inclusive. It pays for the food and their accommodations and their medical coverage while they are there and all that stuff. We would like to help the CCFA in their partnership with Victory Junction Gang Camp, and we would like to help send and sponsor about a hundred kids. Rick: Okay. And if people want to help in that process, do they go to your Web site?

Troy: They can go to our Web site, which is crankinforcrohns.org.

Rick: Well, you have got a lot going on, Troy. I am curious. Where do you see this all headed in the coming years?

Troy: To be honest with you, my long-term goal is to see this thing go national. I would love to see us have national recognition. I would love to see us raise multiple millions of dollars the way the Armstrong Foundation does. I would love to see us be able to find a cure for Crohn’s and colitis. I would love to see us be able to help people who have Crohn’s and colitis but can’t afford medical treatment for whatever reason. I would love to see us be able to help them.

Rick: It sounds like you are certainly headed in the right direction, and I know that a lot of people out there, they look at a problem like Crohn’s disease, and they think, “I am just one person. What can I do to change things?” What do you say to that person out there who thinks that?

Troy: What I say is this: For every person in the world there is a problem. And for every problem in the world there is somebody that can help fix it. So if you see a problem and you want to do something about it, get off your butt and try to do something.

Rick: And put your butt in a bicycle seat.

Troy: Right. If it doesn’t work, regroup. Try again. But for every person that has Crohn’s and colitis disease, there is somebody out there who is willing to give up an hour of their time, 20 bucks out of their wallet to help. I strongly believe that through the growth of the Crohn’s and Colitis Foundation of America – through donations that people make, whether it be monetary or physical time in doing something to help fight it, you know, whatever – in the long term, we are going to find a cure.

Rick: I am sure a lot of people are inspired to hear your efforts and your passion in this cause, and I salute you for that.

Todd, what’s it like from your perspective? You must be awfully proud of your brother.

Todd: Oh, yes. I mean, I was proud already, because he was sitting over in Iraq, and I was sitting in my cozy house – and everybody else is too, eating what we want to eat – and then to have him pull something like this and jump in with both feet, it’s real touching. It really is.

Rick: We want to get to some questions from our listeners.

We have got some e-mails coming in now, gentlemen, so let’s get to them. First one from Portland, Oregon, and this person writes, “I am a Crohn’s patient in remission. I am still plagued with canker sores, however. Do you have any advice?”

And I am going to go to you, Todd. You have been living with Crohn’s for 30-years plus. But you are not a doctor. We should say that up front. So you are not going to get expert advice, but you might get some experience from Todd. Have you had specific experience with canker sores?

Todd: No, I haven’t. I have read about it. Some people do have it. I never had to deal with that though. I don’t know.

Rick: That’s fair enough. So I guess he’ll have to look elsewhere, maybe to his doctor for advice. Our next question is from Everett, Washington. “How does Todd deal with the stress in his life? Does he do anything in particular to reduce stress and therefore reduce pain?”

Todd?

Todd: I was taught this when I was probably 13 or 14 – a gentleman came in the hospital and had what was called a biorhythm feedback machine. He wired us up to it, and pretty much taught us a kind of self-hypnosis almost, how to relax yourself. You start at your toes and squeeze them and squeeze the muscle and feel that muscle and then release it real slow and feel the blood flowing back through, and you go through your entire body. And I can totally be limp in like 30 seconds now. It’s just something I’ve learned over time. That’s how I deal with it. Deep breathe. I don’t know if it’s a yoga-type thing or what it is, but it’s really relaxing.

Think of a perfect spot that you want to be, a mountaintop or in the woods or wherever you want to be, and just imagine that. I go through that whole thing, every single muscle in my whole body one at a time and release it and exhale at the same time and go on to the next one, and it works for me.

Rick: Right. It’s a type of meditation.

Todd: Yeah. It is a meditation. Yeah. Going to sleep, getting rid of pain, kind of imagining yourself shutting that little switch off in the pain central there.

Rick: So you initially learned this from a biofeedback machine, you say?

Todd: Right, yeah.

Rick: Then you can just learn to do it on your own without the machine?

Todd: Yeah. And the guy told me at the time, he had never seen anybody drop the register as quickly as I did. It was amazing. Everybody else, it took them quite a while to get the needle to drop all way down to the bottom, and mine, I dropped it within like 15 seconds. He was really amazed.

Rick: Wow. You are pretty in tune with your body, I guess.

Todd: Yeah. I think that’s a big key right there.

Rick: Our next question comes from Arizona. This e-mailer says, “How much time does Troy spend on Crankin’ for Crohn’s?”

I wondered this myself. Is it a full-time job for you?

Troy: Well, unfortunately it can’t be. Uncle Sam comes first and foremost. I would say I personally spend anywhere from 15 to 20 hours a week working on Crankin’ for Crohn’s. However, this isn’t a project that I am doing by myself. I have to make that clear. I have a wonderful group of friends and family that are currently helping. Some of them spend upwards of 10 to 15 hours a week. Some of them spend as little as one hour a week working on things for the organization.

It’s not something that somebody should go into lightly. If they decide that they are going to do something, they have to be willing to make the sacrifice. It’s not easy. I will tell you that up front. But you are looking at a minimum of 15 to 20 hours a week if you want to be at all successful.

If you look at man-hours, you are going to look at probably from 50 to 100 man-hours a week devoting yourself to the organization and getting the project off the ground. Because after talking with some people, I found out that one of the key fundraisers at St. Jude’s Hospital in Georgia said that it takes a nonprofit organization at least five years to be truly profitable to where they are making the kind of money that they anticipate making, without the benefit of that miracle sponsor – the Oprah Winfrey or the type of person that can afford to make that $150,000 donation. Without that, just regular Joe, 30- to 45 thousand dollars a year type person making a $20 donation is a big deal.

Rick: Absolutely.

Troy: So you have to be willing to spend the time, and you have to be able to call on people and be able to talk to people.

Rick: And get some help.

Troy: Really, you have to sell the concept of what you are trying to do.

Rick: Well said. We want to take another e-mail from New Jersey. “Is Troy ever afraid that he will get Crohn’s? Does the family have a history of the disease?”

Troy: I actually did have to deal with that.

Rick: How so?

Troy: When I was about nine, I myself was also admitted to the same exact hospital up in Buffalo, Buffalo Children’s Hospital, because they thought I did have Crohn’s. I was up there for about a week and a half. I went through every test for Crohn’s disease. I had the same doctor that my brother had when he was diagnosed.

Rick: And this would have been about three years after his initial experience.

Troy: Right. I was having the same type of symptoms. I was continually going to the bathroom or couldn’t go to the bathroom. I had severe stomach pains.

Rick: And what did they find?

Troy: Well, they didn’t find anything at the time as far as a diagnosis with Crohn’s or colitis. But what they did come up with later on, New Year’s Eve 1985 or 1986, was that my appendix had burst, and when they took my appendix out, and the doctor told us later that it was a severely deformed appendix that was causing all my problems. And thank the Good Lord, since then, I have been relatively pain-free and not had any problems.

Rick: And, Todd, do you know if there is a family history of Crohn’s or colitis?

Todd: No. There is not a person in the whole family that has it. My sister has a degenerative arthritis that is linked to Crohn’s and colitis, but as far as the Crohn’s and colitis itself, no.

Rick: You just drew the short straw on that one. Todd:I just drew the short straw on the whole deal, man.

Rick: Okay. Next question comes from Aurora, Illinois. This person says, “Why is it that we walk for a cure, we ride bikes for a cure, we raise money for a cure, and yet there is no cure? And the money raised can never be given to families that have spent all of their money fighting this horrible disease, families that cannot even afford to eat, to make sure that medicine is paid for. SSD won’t help, Crohn’s and Colitis Foundation can’t help, and it seems like no one really cares about the here and now. Crohn’s has robbed me physically, mentally, and financially. Why can’t anyone help?”

What’s your reaction to that, whoever wants to field it?

Todd: I’ll take that. That one there, I can tell you the best and most effective way is to write your congressman and write your senators. It’s the bureaucracy of our government that has got us to the point where a nonprofit organization can’t help an individual, but we can help a cause. Okay? It’s the laws, the way they are.

Rick: Are either of you are guys familiar with something called advocacyforpatients.org?

Troy: I am.

Todd: I’m not, no.

Rick: We did a program with a woman named Jennifer Jaff, and she has created this Web site. Again, it’s , and it’s specifically to help people who are in a tough spot either with poor insurance or no insurance and a chronic disease.

Troy: Right. I had no idea. That’s great.

Rick: It varies by state, by city, so you really have to go to a resource like that and find out what you can possibly do in your situation because it varies depending on where you are. So to that e-mailer from Aurora, Illinois, we say good luck and check them out, advocacyforpatients.org.

Next e-mail from Ohio, and this person says, “I cannot go anyplace to eat out or even at home as I start cramping as soon as food hits my stomach, and I have to go to the restroom about five times and take a pill to make it stop. In fact, I hardly ever leave the house.”

Todd, do you have any advice for someone in that situation?

Todd: Boy, I’ve been there.

Rick: I’m sure you have.

Todd: Yeah. And you almost get paranoid to eat, and that’s a problem. I don’t go out and eat a lot because I don’t know what’s in that food. If I eat at home, I know what I am getting. I try to stay with real low residue foods. Oh, boy. You are going to have to work with your doctor there on that one. I feel for you, though. I know exactly where you are coming from. Exactly.

Rick: I would think the key for this person maybe is to find a way to try the get the disease process under control so that maybe they wouldn’t have such a severe reaction every time.

Todd: Yeah. That’s a tough one.

Rick: It is indeed. Another one for you Todd from Columbus, Ohio, “What are your thoughts in regard to nutrition and Crohn’s?”

And you just sort of touched on it, knowing what food you are going to ingest.

Todd: I think that’s the key to the whole thing. I think your chemical balance is so out of whack due to stuff that’s in our food, all these processed foods we eat. And if you can eat good, healthy food and stay away from the fast food and the fried stuff and eat healthy food, I think that is the key. Keep your mind straight, and stay out of the stressful situations – I really think that’s the key to getting it under control. I really do.

Rick: Another question from Atlanta, Georgia. “Do you have any experience or know the results which have occurred from the use of the expensive drug Pentasa (mesalamine)?”

Do you know anything about Pentasa, Todd?

Todd: I don’t. No. I sure don’t. But I tend to worry about that recurrence, so I just try to stay on that healthy track the best I can.

Rick: And how important is it to have the good relationship, that right relationship with a doctor, Todd?

Todd: Oh, man. I will tell you what – the first thing is to ask the guy, “Are you going to listen to me or do I have to listen to you?” And if his answer is, “Well, you are going to have to listen to me,” I will turn around and walk right out because I know what’s going on in my body, and if he is not willing to listen, I would turn around and find me another doctor. I really would.

Rick: Alright. A listener from Illinois writes, “I’m 59, and I have had Crohn’s disease since 1988. I had a resection of the small bowel later in that year. Then months later the Crohn’s came back in the same area. I have had many flare-ups, and I am now trying an alternative way to help myself. What is being done as far as finding a cause of Crohn’s disease? And is there any research going on about building up the body’s own defenses to alleviate the inflammation process?”

It goes to the issue of research, Troy, and I know that that’s very important to you. This is the whole purpose of your organization.

Troy: Right, and, you know, I’ve done some inquiring as to what specific research projects are going on, and there are projects that are out there that are ongoing right now that are trying to get to the root, core cause of Crohn’s and colitis.

Rick: Are there specific places or Web sites where people can go to find out about those projects?

Troy: I don’t know what they are. It’s a hit and miss thing. You have to travel the Web, get on the Internet and one site links to another site and links to another site. And if you are engulfed in research, and while I was in Iraq during my down time, that’s what I was doing. I was surfing the Internet, trying to find anything I could about Crohn’s and colitis.

Rick: I would think you could just maybe Google “Crohn’s research” and you might get a good start, huh?

Todd: You would get a great start there. And I will tell you if you do that, Google Crohn’s and colitis research, you would be amazed at the amount of stuff that pops up.

Rick: Yeah. And I would think that the CCFA will also have some information for you.

Todd: Right, and they do.

Troy: That’s all public information, the research projects that they are funding. But obviously my belief is you have to find the root cause before you can figure out how to fix it. You have to find the cause of the problem before you can figure out the best way of attacking the problem.

I hope that the people that are doing the research, the scientists and the doctors and the research students and grad students, I hope that they are focusing on the cause in order to find a cure.

Rick: I want to squeeze in one more question here from Colorado. “I have granddaughter with this disease. I would like to know all the information I can get. She is 15 years old. She was born with it, but the doctors at Denver, Colorado, hospital said it didn’t show up until her teen years.”

So in terms of getting facts about Crohn’s disease, which it sounds like this person is craving, where do they go? Is the CCFA the best source, Todd, do you think?

Todd: Yeah. There are tons and tons of articles in there. I’m more leaning towards alternatives. You need to find a doctor who is not totally stuck on just using drugs just to treat the disease. Treat the body.

Rick: Got it. And with that, we are almost out of time unfortunately, but I would like to get some final thoughts from each of you. Troy, if a person has a great idea and wants to create a charitable organization, can you give us three top things in 30 seconds they should do to get started?

Troy: Yeah. Number one, find out their state laws. Every state has certain guidelines that nonprofit organizations have to follow. In regard to licensing and solicitation, check the tax codes to make sure that what they are doing is actually going to be a nonprofit effort because the IRS, the big money grubbers in the sky, they say there are only certain types of things that can be classified as a charitable operation.

Rick: And three?

Troy: Three, I would say create a plan and go for it. Find a vision and then reach for the stars, man. There are so many things out there that people can do to help. There are endless possibilities if people just wanted to get involved. You know, by all means come to crankinforcrohns.org and hit me up. I’ll talk to you about anything and give you as many suggestions as I can.

Rick: Great. We have to leave it there. Troy and Todd McManus, thank you both, gentlemen, and good luck.

Todd: All right. Thank you, Rick.

Troy: Thank you, Rick.

Rick: Thanks for sharing your story, and thank you in the audience for joining us. From HealthTalk, I am Rick Turner.

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